I"m still here

It's frustrating waiting for news.  Especially when that news is about your health but apparently they're not going to tell me until my appointment in June.  So I guess I should stop waiting for the phone to ring.

I'm not doing all I should do to take better care of myself.  The diet was so restrictive I couldn't stay on it.  I was hungry and thirsty 24/7.  I need to find something more doable because this, like every other diet I've been on, has made me gain weight instead.

Today I'm not feeling well, a bit short of breath and just so very tired.  I forget that I still have the symptoms of this illness and think that since I have a diagnosis, I am on my way to being fixed.  In reality nothing has changed.  I still have the debilitating fatigue and everything I do is a supreme effort.

Last night we kept hearing sirens which is nothing unusual as we live on a major highway but these sirens kept stopping a short distance away.  Within a half hour I could smell smoke so I looked outside and there was a haze in the air.  The streetlight in front of our house had a gray halo around it and the car driving up the street had wisps of smoke in front of the headlights.  The apartment complex a block and a half west of us was on fire.  No one was killed and 2 people had smoke inhalation but Professor really suffered from the smoke in the air.  He laid down in the grass and just went limp.  I had to carry him inside and set him in front of the fan before he would respond.

I"m nearly done with Steph's socks.  Robyn's are finished but I'm going to send them together since it's cheaper that way.  I also started on a girl's sweater, using the yarn from the shawl I was knitting for my mom and didn't get done before she passed away.  I've got 2 more sweaters to donate to the library's drive for winter clothing next winter.  And a couple of baby blankets.  I'm also considering frogging the fair isle sweater I was knitting for myself.  I found a couple of other sweaters I like better.

I've been doing some reading although the library pile doesn't seem to be getting any smaller.  I keep adding to it.  I have moments when I can't seem to concentrate to read and the internet hasn't been on my mind a lot lately.  I'm sure I'm depressed by the diagnosis and inability to stay on a diet to save my life.  If dieting were that simple, no one would be overweight but it's not and I do wish people would understand that just eating less isn't necessarily the answer.  I had reached a point where I was gaining weight on 1200 calories a day.  That always happens to me...I reach a point where no matter how few calories I eat, my body starts hoarding the weight I already have.  I've tried eating even less and still can't lose.  A lot of exercise isn't an option for me right now.

Plus the overwhelming fatigue is a pain in the ass. 

And now it's hot.  We went from cold to hot with nothing in between.

Well, I'm going back to bed to lie down for a bit.  I'm supposed to rest every afternoon.

Pacing myself

I am exhausted.  The pace of early morning appointments seems to have slowed down for now, at least.  I had to be in Waupan at 9 a.m. for an appointment with the cardiologist on Friday and then in Fond du Lac at 6 a.m. on Monday.  Which meant we had to leave here at 5 a.m.  The stress test is done, though, and I just await the results, which I should be getting soon, I hope.  I saw the cardiologist briefly during the stress test, which is why I had it up in FdL, so he could be there.  They had pushed fluids on me for the test so I had used up my daily allotment before 10 a.m.  I was so tired that I overdid it on both food and liquids that day and ended up short of breath on Tuesday so I took a full Lasix instead of half, which the dr had reduced me to.  I dropped 5 of the 7 pounds I picked up that day.  I won't do that again.

I haven't done a lot of cleaning but I have been doing some cooking and a bit of laundry, although I don't carry it up and down the stairs.  Today I'm going to work on the dining room.  I think that will improve my mood more than anything else...having the main room clean.  Then some more laundry and some more cooking.  I'm fixing 2 meals at night...one for them and one for me.  Theirs is generally very simple to fix so it's not a lot of work.  Mine take a bit more thought.

I'm working on the purple sock for my baby sister.  I just got to the heel flap last night when I needed to just shut everything down and go to sleep.  I think I was snoring by 10 p.m.  Woke up at 8:30 a.m. but still didn't feel rested.  I can't recall the last time I did feel refreshed by sleep, though, so that's not surprising.  More knitting today but I also want to get busy on some other crafts as well.  I'd love to pick up my pencils again and get back into drawing.  I had gotten to a good point a couple of years ago and then just quit for some reason so I have to practically start over again now.  That's what has been putting me off of it...the whole starting over thing.

It's sunny and gorgeous here today.  I need to get the new clothesline up.  The winter snow destroyed the old one, breaking and generally grungy looking.  Zach will have to do it because I can walk and stuff but I can't lift and I think tugging on a clothesline is the equivalent of lifting.  I also need to refill the bird feeders and see if the baby birds have left their nests under the front awnings so I can extend them.  The sun is particularly bright in the front rooms.  I haven't heard any noises coming from the awnings in a couple of weeks so I hope they're gone by now.

Well, I think I'll go make my bed and put the clothes in the dryer for now.  And I will be taking my time cleaning.  No mad frenzies for me for a while.

Some answers

Just got back from the cardiologist's office with some answers.  Not a lot but some.  My heart is slightly enlarged but the valves are in good shape.  I have moderate heart failure but he thinks we can reverse it or at least most of it.  He thinks I might have blockage though so I have to have a stress test on Monday morning (at the obscene hour of 6 a.m.) and after that most likely a heart catheterization.  And then I'm guessing surgery after that.  He didn't really comment on that.

So I'm cleared for light exercise, working toward more intense exercise as I get better and light cleaning and cooking.  Maybe not so much today though as I'm really tired from the dr's appointment and the shopping we did afterward.  But it's good that I don't need to use the carts anymore or even the handicap placard.  Unless there isn't any parking within 400 yds, I'm thinking.  I know I can't walk from the back of the parking lot right now but I can't recall the last time I had to do that so I should be okay. 

I finished up Robyn's socks last night and looked at patterns for Steph's.  She liked the pink ones I knitted for our aunt so I might knit those in purple.  I can look around first before I decide though.

I should get back to the sweater as well, especially since it feels like winter again today.  It just requires more concentration which has been in short supply lately.

Well, off to fix myself some lunch and then a nap.  Maybe some light cleaning later. I figure I got the walking done at the store today.

Still waiting for answers

I got the handicap placard with no resistance from the dr.  She was glad to sign the paper for me.  It's for 3 months after which time the dr hopes I'm back to normal...or better.  Fear is a powerful motivator when it comes to health.

I had never seen her pissed before but when she found out I still didn't have an appointment for an echocardiogram she was livid since time is pretty important.  The appt lady smugly claimed no one told her I needed one but the dr showed her the report that went her way.  She claimed she never got it and that she only knew I needed to see the cardiologist.  How could she know one without the other as they were both on the same paper?  I hope she got her ass chewed out after I left.

She made her call up and get me an appointment as soon as possible instead of faxing them so I go in at Wednesday at 7:15 a.m.  Groan!  It's an hour drive so I have to leave here about 6:15 which means I have to get up EARLY!!  Not looking forward to that but at least I just have to lie there under the ultrasound.  No poking at my already bruised arm.  I have three extremely large bruises still.  One went away quickly but the rest are still purple and yellow.

I'm waiting to find out what caused the CHF for sure and if we can do something to minimize the damage and if anything needs to be done to fix it...meaning heart surgery:  either valves or bypass.  If it's from the chemo, there's nothing much they can do except try to keep it from getting worse (which they can do) and possibly rehabilitate the heart a bit.  Though not a lot.

I wondered why they kept checking my ankles for swelling since my fluid was on the lungs which indicates left-sided damage.  Right side causes swelling on the ankles.  But when she showed me the ejection numbers, both of them were red, meaning I failed the tests.  I didn't ask but I wonder if that means both sides have damage. Which seems to me from what I read that that would indicate chemical damage rather than physical.  I don't want to speculate (although I can't seem to stop myself.)  Have to wait and see.

I've been getting some knitting done on the sweater and the second sock for Robyn.  I'm staying in bed a lot because I'm not supposed to exercise at all and movement is supposed to be limited.  I have fixed a few meals for myself but they were simple.  Poor Zach is cooking twice for each meal except breakfast.  And a few times when I could do it myself but we've reached a stage when I need more and better meals so he's going to get a lot of practice cooking until I'm back on my feet.

He's doing all the laundry, all the cleaning and almost all the cooking.  Without complaining at all.  Gotta love the guy!

Now I think I'm going to take a nap.  Even though I was on the cart, I did have to walk from the parking lot and back and I'm pretty tired.  I hope that goes away, too. 

Living with mortality

There is a lot to adjust to, both physically and emotionally.  I made the mistake of looking up the longevity of people with congestive heart failure.  Quite different from the positivity the dr showed me at the ER.  Then again, when I looked up the prognosis for cancer survivors or my particular type, all the sources I saw only gave me about 5 years with a near-negative assurance that the cancer would come back.  It's been nearly 12 years. 

I'm going to make an appointment to see my gp Monday.  The nurse said she didn't need to see me but I need to see her.  I need a handicap placard for the car.  I just can't walk across parking lots like I used to.  And in the future I will use the electric carts at the store.  They didn't have any available when we went yesterday and I ended up thoroughly exhausted.  I was nearly in tears by the time we made it back to the car.  And yet I don't want to be a shut in and not be able to go anywhere in the future.

When we got home I rested, as the papers they sent home with me said after any activity.  I ended up sleeping for 3 hours actually.  And then went to sleep at a reasonable hour.  Today I've spent in bed most of the day.  I got up to check my email and went online for an hour but shut down and went back to bed.  Fixed myself breakfast, had help with lunch and will fix my own supper since all I have to do is pop it in the microwave.  I managed to lose the weight I had gained this week.  Don't know if that's because I was being faithful to my sodium allowance or if I just ate less and all that walking helped.  I'm sure it's both.

For the first time, in spite of what I have said in the past, I am giving in to the fatigue.  I am so very tired today, moreso than I remember in...well, ages.  I know now that it's not just a good idea to rest when I am tired, it's vital to the health of my heart.  It's not about being lazy or being perceived as being lazy.  I am tired for a reason.

I didn't knit yesterday because of the fatigue and probably won't today but I hope to get back to it tomorrow.  I'm ready to kitchner the toes of the first sock.  I don't have the concentration skills right now so I'm waiting until I've both rested and learned to put the stress in a place that is too high to reach.  That's another thing that I vital to outlasting the averages. 

It's a serious thing to realize you really do have a shelf life, a sell-by date.  I don't remember feeling this aware of my mortality when going through chemo, probably because I couldn't really see the end in spite of knowing the cancer could kill me.  In my mind, it might do so but it would be far off.  Now, as I edge closer to my 60th birthday, and as I am a week away from losing my mother, it's more real and much nearer than I used to think in my immortal days. I'm hyper-aware, a bit frightened by it all and yet at peace...very conflicting emotions. 

I don't intend to lay down and give up by any means.  I am working harder than I ever have to regain what I can of my health and hope that I can keep it up.  Follow through has never been my strong point.  Now it's a matter of life and death.  Very compelling.

Spirituality plays a part in all of this...the whole mind/body connection being what it is.  But that's for another blog.  I am at peace there, too.

So sorry to be so maudlin today.  I'm not trying to look death in the face and scoff.  I'm just being realistic and honest.  I haven't even processed my mother's death yet and now I face my own.  Whether it be in a couple of years or 10 years or 20.

And yet in the scheme of things, this congestive heart failure may have extended that expiration date as the way I was living was so harmful to my body that, had I gone on the way I was, my sell-by date could have been in months rather than years.  Certainly I didn't eat properly, didn't exercise and was weighted by mountains of stress that alone, were killing me.  Zach told me he likes to think of this as something that extends my life instead of limits it. 

I think I will look at it the way he does.

Dealing with the aftermath of all this

I'm trying to find the positive in all this but I admit it's a hard search.  Yesterday there didn't seem to be any improvement.  The diuretics weren't working the way everyone said they would.  I wasn't in the bathroom every few minutes and my mouth felt dry all the time because I'm limited in the amount of fluids I can take in. Although I did have more output than input, I didn't lose an ounce yesterday. 

No more bacon, chips, french fries, canned soups, lunch meat, cheese...the list goes on and on.  I did have a half cup of diet soda yesterday because, damn it!  I miss it.  I miss coffee in the morning even if it is decaf.  I just don't have the amount of fluids to spare on coffee when I need it to keep my mouth wet.  I did go a bit over what the internet recommended but as I haven't had any specific instructions from any doctor yet, I don't know exactly how much I'm allowed.  Just to reduce my fluid intake and cut way back on sodium.

So far no side effects from the new meds, which is good but I'm bored and have cabin fever. I miss getting out...which isn't because of the congestive heart failure but because the truck still hasn't been fixed.  We were a little busy with emergency room visits. 

So I'm feeling a little pouty today, a lot lonely and extremely dependent on Tom.  I never liked that feeling at all. 

I did find something to do yesterday. I found two sweaters I never finished so I frogged them, well, one of them completely...the other down to just above the ribbing.  It looked like Hannibal had gotten in there to sleep and had kneaded the sweaters, breaking down the yarn a bit so I'm starting over. 

I also found Ballykissangel on Amazon prime to watch for free.  I love that show but as I can't walk from the parking lot to the library without gasping for breath, I can't get them from there so getting them from the internet is great!  I watched 3 episodes while ripping back on the sweaters.  I'll watch a few more today.  But  I keep falling asleep during the day.  I did sleep well last night but it was 4 a.m. before I got sleepy.  Up until then I just did some cat-napping.  Dozing and waking up 20 minutes later.

It's at times like this that I really miss my Mom.  I would have called her up and talked to her about this diagnosis and she would have told me of others she knows that have it and how well they're doing and some tips to get me through.  There's no one to talk to about this now.  No one.  Tom doesn't need it on top of all he's got going on...back to working 14 hour days and his very good friend lost his wife to cancer over the weekend and he couldn't get to the visitation or the funeral because of, well...me. 

I haven't properly grieved for my mother yet.  I'm sure I will someday but for now my present health crisis is overwhelming anything else going on in the world.  At least for me.  

We have a diagnosis

Once upon a time in a galaxy far, far awa--no, wait, that was this galaxy--I had chemo. Now chemo medications are mostly poisons that kill off cells in your body.  And while they can do great things to nasty cancer cells, they can also cause harm to healthy cells as well.  Fast forward to about a year ago when i started noticing I was tiring out more and more often and unable to function as well as I used to.  I thought it was the fibromyalgia which causes a lot of fatigue in the people who have it.

Not so.

Fast forward again to a month ago when I developed pneumonia that got better and then got gradually worse.  Unfortunately the pneumonia triggered that nasty side effect they warned me about, which was apparently already manifesting itself in my body anyway.

So my dr agreed with Dr. Jerk's expensive tests and sent me to the ER in Fond du Lac to meet with the pulmonologist and be evaluated by him.  Thankfully he sent me home after his assessment but unfortunately that nasty side effect will be with me until the day I check out.  The one side effect I really feared was congestive heart failure.  And that's what all this has been.  Initially it was the pneumonia, the pulmonologist agreed, but now it's not.

He assures me I will have a full life ahead of me but it won't be as active as it used to be as I now have limitations due to a weakened heart muscle.  On more meds now and hopefully this will get rid of the excess fluid in and around my lungs. 

I'm going to have to stay in bed for a while and then gradually get up and about, walking and such but no strenuous exercise and no really physical work at home.  At least for quite a while.

I'm still processing this emotionally but for now I'm going to bed and take a nap.

Life's ass kicking

I spent yesterday afternoon in the emergency room with a doctor who was convinced from the beginning that I never had pneumonia but some other exotic illness (as yet to be name) instead.  So I had many expensive tests that will further drive us further into debt...which was all brought on by medical expenses in the first place.  So I am on another inhaler and lasix to get rid of the fluid in my lungs still (more has been added to the left one plus some fluid on the heart as well) even though there is no evidence that my body is retaining fluid.  Apparently I didn't have pneumonia because my white count wasn't high enough (it's higher now) and I wasn't running a fever (it was 98.9, which for me is a fever as my normal temp is 97.2.)  I'm now running a temp of 99 so that apparently isn't a fever either.  So I can't wait to talk to my dr so I can find out what's really wrong.  This guy wants me to have an echocardiogram and see a pulmonologist.  If my dr says I should I will but this guy was pretty free with my money as well as the insurance's money.

My mother's funeral was today.  I wasn't there, of course but my sister said that over 300 people went to her viewing (it was listed as a "calling"...not sure why) and over 150 at her funeral.  The line to view her was 3 hours long.  My mom was a school secretary, among other things and was also very active in her church.  She affected a lot of people in her life.  I suppose it will sink in eventually.  I'm not even sure I'm past the acceptance stage yet as it's not that real for me.  They taped the funeral so I expect when I see the dvd it will become more real.

Obviously I'm not knitting much right now.  Staying in bed as much as I can, taking my meds and trying to rest.  I'm able to breathe through my nose now instead of panting through my mouth so that's an improvement.  I probably won't knit tonight either.  I'm going to rest.

Today is my husband and my oldest son's birthdays.  It was pretty crappy for Tom as he's had to wait on me and he also found out a good friend lost his wife to cancer over the weekend.  He knew them both so this hit him pretty hard.  My mom, whom he really loved, his friend's wife and me being sick.  Not a fun birthday.  So Zach took him out to eat and spend some time alone.  They haven't done that for years so I'm glad they can do this.  I hope his day improves. 

I should probably lie down for a bit and maybe take a nap.  I mostly just napped last night because the lasix kept me in need of the bathroom all night.  I need to get up early tomorrow and call the dr for an appointment for Zach.  He's still coughing after nearly a month.  And he's still got a sore throat.  Poor guy has been taking care of me and not getting rest himself.

She's gone

I got the call at 4:30 a.m.  I was still awake from when Tom got home so I knew immediately what the call meant.  Her long battle with kidney disease and infection and cancer is over and she is on the other side now, at peace.  I won't be going down for the funeral for several reasons, the biggest one being my health.  I'm still battling the pneumonia and now it looks like Zach might be battling it as well.  I'll try to get him an appointment on Monday. 

It will, of course, be a completely Christian funeral.  That is the religion of my family and that is the religion they should use to comfort themselves.  My older sister is a pastor and will deliver the eulogy.  They intend to record the service for me.

I'm pretty numb right now.  Not really feeling anything.  I haven't cried yet and don't know when I will.  But I do know that eventually I will cry.  We had to run to the store to get some cold medicine for Zach (and me) so we stopped in at Wendy's to grab a bite.  I'm friendly with one of the managers and several of the workers.  They could tell something was wrong and since Joe, having just lost his grandmother knew my mother was dying, knew immediately what it was.  I got hugs and a great deal of sympathy.  How odd that the only friends I have are at a fast food place.

Tom is taking some much-needed time off this weekend because he's about to burn out from all the hours he's working.  I hate to do this to him but I'm going to bed for the weekend and so is Zach.  I have an appointment with the dr on Tuesday and I don't want her putting me in the hospital.  I don't think she'll give me a second chance.  I got soups and microwaveable things. I desperately need to clean but that will just have to wait.  Along with the laundry.  Zach's panting like I have been doing so he can't be going up and down the stairs either.

It's still very surreal for me that my mother has died.  It was surreal that she was sick...this woman who was rarely ever sick until the last couple of years of her life.  The dementia took away the woman I knew but every now and then she surfaced and we could have those good phone calls.  Getting to see her one last time, knowing it was the last time and even though I never did say good bye, it was intimated and with that, there was closure.  And odd thing we humans need more than anything else, it seems.

And so I'm going back to bed, to knit the socks for my niece and sisters. 

Relief, numbness, sorrow and joy.  Odd emotions to process all at once but that's what is squirming around inside me now.

Soon...

Mom is still with us.  I was able to "talk" to her earlier today. My older sister put the phone up to her ear but she didn't seem to react at all.  I'm not sure if she's in a coma now or just sleeping most of the time.  I forgot to ask.  I was able to say goodbye even if I didn't actually say the words but I feel better now and Mom leaving us.  It won't be much longer.  Although her vital signs were back to normal when I called Peg they were low this morning.  And she's no longer putting out urine so the toxins will probably build up more quickly now.  She's obviously in pain, too so they are keeping her up with pain meds and sleeping aid at night, but otherwise just care to make her comfortable. 

I haven't worked on much lately but I did knit on the sock a bit last night. Then had to un-knit everything I had accomplished because I made a mistake.  Obviously my mind wasn't on my work.  Zach wants a cover for his cell phone because he can't put it in his pocket because it will scratch so we got some Lion Brand blue variegated yarn.  It's some kind of Vanna's Choice but it's a bit pricier than the skeins I've used in the past.  But since it requires so little yarn, I thought it would be okay, especially since I can use the rest to make tarot bags or bags for crystals and such.

It's cold, windy and rainy today.  A tree got blown over in the next town but I haven't seen any damage around here.  Hopefully tomorrow it will warm up.  We're thinking of going to Hobby Lobby tomorrow although I hate shopping there.  Still, knowing that what we make will be sold to Pagans sort of makes it better.  I want to look at jewelry making stuff, and tools to use while working with clay.  I might not buy anything yet but I want to get the trip out of the way while I'm still "down" with this pneumonia.  Hopefully by next week I'll be able to get up and around.  I have an appointment with the dr on Tuesday for a follow up.  Hope I pass.

I'm going to bed now to knit and read or maybe even just sleep.  The good news is that I'm sleeping a lot lately.  No bad news that I can think of except I'm still short of breath whenever I exert myself at all.  But as I'm coughing more and better I hope that will change by next week.

Off to put on my jammies and crawl under the covers and get cozy.